LIFE IS NOT ABOUT WAITING FOR THE STORM TO PASS.. IT'S ABOUT LEARNING HOW TO DANCE IN THE RAIN.

Tuesday, September 8, 2009

Guess What???

That's right, we. are. home!!!

After a mere six days in the APH Special Care Unit we finally got kicked out!

Well, it was more like a halting nudge, they did question whether we might be more comfortable staying another day or two.

But DR.P knows all too well that we know how to handle it. We have "been there and done that" more than a few times so we're pretty comfortable going home where we are.

His "funky" heart rhythms seem to have resolved, the desatting episodes have become fewer and farther between.

If anythings comes about we're very prepared. We have a pulse oximeter to keep an eye on his sats and heart rate, as well as a full array of O2 equipment and meds at home.

Other than the IV support there really isn't anything they are doing now that we can't do at home and his feeding is now up to 35 mls per hour. As long as he's fed continuously for now he can do without the extra fluids and nutrients.

We did finally get a glimpse of his incision today and I have to say it looks awesome.

The outer incisions beauty really makes it look like such a simple thing. If we weren't told about the internal staples and hardware I never would have guessed.

For the moment he is calm and content. Pain meds on board. Looking forward to a real bath in the morning. A weeks worth of sponge baths just don't do the munchkin justice.

Thanks again for all the love and support, it sure does make the tough times easier to bear.

I'm a 37 year old Mom to four boys and two girls. My youngest son was born with Down Syndrome and the many medical issues that come along with it. My lil man has congenital heart disease, lung disease, GI problems. He's survived heart failure, open heart surgery, a diaphragmatic hernia that collapsed his lungs, and he is currently battling failure to thrive brought on by the toll it's all taken on his little body, but he's strong and together we are learning to navigate the craziness and to revel in the beauty that is this life.
This is Vincentio's story so far, far from over. It's not just a Down Syndrome thing. It's a Congenital Heart Disease thing, a Congenital Diaphragmatic Hernia thing, a myeloproliferative blood disorder thing, a G Tube thing, a "failure to thrive" but I'm Still A Survivor thing, and more than anything... It's about how one little boy can bring an aching family together and make them whole again.